PCSG coeliac disease guideline

The management of adults with coeliac disease in primary care

Introduction

Coeliac disease is a chronic, permanent and if untreated, potentially life-threatening condition. In coeliac disease, the mucosa of the small intestine is damaged by gluten, a protein found in wheat, rye and barley. A similar protein in oats may cause damage in people with severe sensitivity to gluten

The damage to the small intestine results in the reduced ability to digest and absorb food and causes malabsorption of essential nutrients such as vitamins, iron, folic acid and calcium

Key facts about coeliac disease

As many as one in 100 people in the UK have positive coeliac serology; the clinical significance of this is unclear

Coeliac disease is under diagnosed in the UK

The only treatment for coeliac disease is a strict, life-long gluten-free diet. Effective management therefore relies on regular follow-up of patients to ensure strict adherence

Symptoms

Coeliac disease is often undiagnosed or misdiagnosed in general practice unless the condition is actively considered. Coeliac disease should also be considered and discounted before a diagnosis of irritable bowel syndrome is made

Coeliac disease should be considered in patients presenting with:

iron or folate deficiency anaemia

Vitamin D or Vitamin K deficiency

tired all the time (‘TATT’) or chronic fatigue

unexplained diarrhoea

abnormal levels of dental decay

persistent mouth ulcers and angular stomatitis

infertility

dermatitis herpetiformis

Particularly if the patient also has:

type 1 diabetes

autoimmune thyroid disease

osteoporosis

infertility

Down’s syndrome

Due to the genetic basis of coeliac disease, it should be considered if there is a family history of coeliac disease

Diagnosis

Initial diagnosis is by means of a simple blood test for gliadin antibodies. Endomysium antibody (EMA) and tissue transglutaminase (TTG) are non-invasive tests that provide a simple means of screening for coeliac disease. Tissue transglutaminase is now the screening test of choice and is gradually replacing EMA. It may, however, be negative in 2.7% of people with coeliac disease who are IgA deficient. Therefore consider requesting an IgA level at the same time

For patients with an uncertain diagnosis, retest serology after six weeks on a diet that includes two slices of normal bread per day

Following a positive serology, the diagnosis needs to be confirmed by small bowel biopsies while the patient is on a gluten-containing diet

Management

Once diagnosis is confirmed, coeliac disease is managed by following a strict gluten-free diet which should resolve many of the symptoms and improve the patient’s health outcome

Benefits of long-term adherence to a gluten-free diet

Effective management of coeliac disease relies on regular follow-up of patients to ensure strict adherence to a gluten-free diet

Other reasons to ensure adherence include:

The risk of developing the long-term complications associated with coeliac disease, as previously mentioned, is likely to be reduced and the individual is likely to return to full health

Almost 50% of all coeliac patients have an inadequate energy intake, and 11% have an inadequate intake of calcium and vitamin B6. 80% of patients with coeliac disease have an inadequate intake of vitamin D

Regular follow-up visits to monitor adherence by a health professional has a positive impact and helps the patient maintain a gluten-free diet

Clinical monitoring of adherence to a gluten-free diet

Serological testing is an accepted and reliable marker for dietary adherence to a gluten-free diet

There is no need to repeat the small bowel biopsy after initiating a gluten-free diet unless the patient’s clinical condition fails to improve

Follow-up

Patient adherence with a gluten-free diet is poor; ranging from 45–87%

Good dietary adherence is aided by the ease with which patients can obtain appropriate amounts of gluten-free products on prescription. Regular access to a dietitian has shown to improve adherence to a gluten-free diet. Patients should therefore be followed up throughout their lifetime so that the primary healthcare team can ensure long-term adherence to a gluten-free diet

Regular follow-up is also an opportunity to provide patient-centred care that is sensitive to the individual’s circumstances

Frequency

After diagnosis, the patient should be reviewed after three months and six months to ensure that they are making satisfactory progress and managing the gluten-free diet. Thereafter, a yearly follow-up is recommended

Pregnancy is a particularly important time for patients to be reviewed

Organisation

Create a database of coeliac disease patients to facilitate recall and audit

Use a template to record clinical data in a standardised way, in order to facilitate audit and research

Have a named person who will have clinical and administrative responsibility for the service

The service should be audited annually: audit standards may include a number of patients who have recorded evidence of:

compliance with a gluten-free diet

nutritional status

body mass index

osteoporosis assessment

Annual assessment tests

The annual assessment should involve assessment of, and motivation towards, strict adherence to a gluten-free diet. The prescription should be reviewed to ensure it is appropriate. Development of long-term complications should be monitored

ovitamin D supplements can be prescribed if the patient has reduced mobility

hormone replacement therapy and biphosphonates should be considered if the patient is osteoporotic

Because there is some degree of splenic atrophy in most patients with coeliac disease, it can be sufficiently severe to cause peripheral blood changes in about 25%. Patients should therefore be considered for:

discussion of familial risk if required. First-degree relatives of people with coeliac disease have a 1 in 10 chance of developing the disease and should be assessed if they develop suggestive symptoms

The role of the primary healthcare team

GP

The GP can ensure that:

at least the recommended minimum monthly amount of gluten-free products is prescribed to enable the patient to adhere to a balanced and healthy gluten-free diet. Patients have varying requirements for gluten-free foods depending on their age, gender, occupation and lifestyle

the patient is reviewed annually with or without the input of the gastroenterologist and/or dietitian, depending on the needs of the patient

This CPD activity consists of 6 multiple-choice questions (MCQs) designed to test your knowledge on dyspepsia and gastro-oesophageal reflux disease in adults—you will then be prompted to reflect on your learning.